So after seeing another specialist 3 weeks back and being told the steroids ive been on are at a useless level and just about enough to give me all the side effects with no benefits ive been told ive gotta go to London and be admitted for 6 days for them to repeat the tests as there not happy with the other specialists results then stay in for IVIG,
So i understand the basics you're on a drip and its slow going but does it make you feel bad ?sleepy? painfull? or just confined whilst its happening. Can you go walk about afterwards as i hate being stuck anywhere for any length of time .
How do you feel afterwards ?
I know people are going to be different im just trying to get my head around whats likely to happen ,ive managed to avoid ever going to hospital for last 38 years and 6 day visit seems a very scary prospect.
When I went for my first treatment, I was addmitied for 6 days. It was 12 hours on, 12hours off IVIg for five IVs. At first I lost my appittite the first two days. On the third day I got very sick 9 (flu like) with a sevre headacke. The fourth day, I started feeling better. However the headacke remained, but not as bad. This side affect stayed with me for several weeks. It took almost two weeks for the full affects of the IVIg to set in.
I now go for treatments as an outpatient. It is still five IVs, but only about four hours each. Side affects are not as bad. I do not get a sick, but the headacke is the same. I do not see as much differance after the IVIg. However I am not in aqs bad of shape when I go in for IVIg.
I am a lot like you, I managed to avoid hospitals for 46 years. Then the last year I was in the hospital four times an average stay of five days. But I look on the bright side, what kind of shape would I be in without it.
Can not understand the 6 day visit - appears REALLY excessive. I have had a very aggressive onset CIDP and my IVIg started with a high level "loading" dose. I had the neurologist test in his office, blood tests, CT Scan, bone marrow biopsy and all for about 1 day in total over two days and not overnight. The biggest delay was waiting for the results! From the start of the final test round (the CT Scan and bone marrow) to the first IVIg was just one week - mostly waiting! Even after the bone marrow biopsy (the longest procedure - a few hours - under light general) I could probably have driven home (but had a driver because they insist after a general).
IVIg is just plain boring - (unless you hate being perforated.... I don't like needles and go to my "happy place" for that!) - sit for 2 to 3 hours and read a book (DON'T FORGET THE BOOK - or crosswords or computer or whatever entertainment you have that is portable). At my facility you can take the drip stand and walk around if necessary (I have not done that yet).
The first session will be slower (probably on a controlled pump rather than a drip) than later as they are seeing if your system reacts. I started with 5 sessions in 5 days. Self drive and public transport to and from. After each session I have felt slightly nauseous but found that some food fixes that in an hour or so. At the end of that 5 days I was quite delicate for a few days as it does get a bit cumulative however that went away before the end of the first week.
After my last session (I had my first monthly last week) I was A-OK to do a 250km drive two hours later (cruise control is great on the open highway - no way I could go that time in city driving because of what CIDP does to my legs).
At my last session the nurse said they can arrange for the IVIg to be administered almost anywhere though I suspect there might be some conditions and they would not do that for the first few sessions. It certainly is not complicated. I think they just like to have you doctor in phone contact if it is necessary. Last time my doc was on the other side of the city!
Did I miss anything? Just ask. I am a beginner but I can tell you how things have been going to date.
So far
day one
sat around for 9 hours then told sorry no beds free go stay at this hotel and come back in morning( I live 90 miles away from hospital )
Day two
No one knows anything , then finall sent to redo nerve conduction test again , then still no beds , so now sitting on day care ward waiting to start infusion and no idea what will happen next…
Hope you are not paying for that! (and just realised my photo shows the IVIg setup)
pampers said:
So far
day one
sat around for 9 hours then told sorry no beds free go stay at this hotel and come back in morning( I live 90 miles away from hospital )
Day two
No one knows anything , then finall sent to redo nerve conduction test again , then still no beds , so now sitting on day care ward waiting to start infusion and no idea what will happen next........
So now on day three of 4 ,they re worked the doses so im now doing 5 bottles a day over 4 days.
,
Only down side so far is I’ve been having it done over night to try and catch up with the missed days so first night started at 10.30 pm for 12 hours slowly catching up and be back in daytime soon.
All done now and just to back home ,20 bottles f ivig later no real side effects to speak of raised bloodpresure and bit of a headache but nothing like I was expecting.
Hopefully it will kick in now and I can get some positive results.
Just catching up on how you went. Looks good - bit like my experience but more complicated getting it done. Do not expect quick results. I suspect that it was by the second week that I could be reasonably certain there was a change. At the end of week three it was down a little, week 4 - new dose, now about 2 weeks after that probably better. Looks like it might be an up - down - up - down ride.
Point is - happens slowly and you are never really certain. My physio did some baseline tests and they show a little improvement - but are very subjective. See what the neurologist nerve conduction test says in a few weeks.
Main thing - I am quite certain it has stabilised - not getting worse. And that is GREAT!!!
pampers said:
All done now and just to back home ,20 bottles f ivig later no real side effects to speak of raised bloodpresure and bit of a headache but nothing like I was expecting.
Hopefully it will kick in now and I can get some positive results.